Say Ahhh!

In many cultures, the first birthday of a child is a major community celebration.  It signifies that the baby has made it through the critical first year and is now destined for great things.  

We should be celebrating the first year of the Children's Health Insurance Reauthorization Act (CHIPRA).  CHIPRA renewed the Children's Health Insurance Program (CHIP) and gave states new tools and fiscal incentives to enroll more uninsured children in CHIP and its larger companion program, Medicaid.  Unfortunately, for many of us, it just doesn't seem right to have a big celebration when there is so much uncertainty over the future of health reform.  I confess that I was reluctant to celebrate CHIPRA but when I thought about how the past year would have been without it, I came to my senses.  Without CHIPRA and the temporary increase in federal funding for Medicaid included in the economic stimulus package, the health needs of so many more children would have gone unmet. 

In the past year, while private insurance has become less available and more expensive and families faced the most difficult economic times since the Great Depression, the renewed CHIP program and Medicaid have offered a vital lifeline to America's children.  Thanks to the strong resolve of national and state leaders, many of our children have been sheltered from this economic storm.  

CHIPRA, and the increased funding for Medicaid, helped states strengthen and maintain their commitment to children's health coverage just when they needed it most.  While the financial investment was relatively small, it made a huge difference in the lives of the people it helped.  Just ask the Simpson family from Benton Arkansas who were able to maintain CHIP coverage for their children when Mr. Simpson lost his job as an electrician. 

This is but one example of the lives touched by the positive actions of national and state leaders to sustain and strengthen children's health coverage over the past year.  Families with children who had asthma, diabetes or autism who couldn't afford private insurance had access to health coverage so they could get their children the treatment and preventive care so crucial to their well-being.  Parents who lost their jobs and health insurance were able to turn to CHIP or Medicaid to secure coverage for their children.  (It would be better for the entire family if the parents also had access to stable, affordable health coverage that didn't disappear when they lost their jobs but we'll have to wait for broader health reform to make that improvement to the health care system.) 

CHIPRA was not intended to solve all of the gaps in our health care system but was designed as a bridge until our nation's leaders were able to pass broader health reform.  While the timing of health reform is uncertain, one fact remains clear - children and families need access to secure, stable, affordable health coverage that won't be taken away if they lose a job or become sick. 

So what should we give CHIPRA on her first birthday?  How about a sibling named Health Reform?

While there hasn't been much good news coming out of Washington lately on the health care front, the President's newly released FY 2011 budget offers some positive developments.

Most notably, the budget proposes $25.5 billion to extend the temporary FMAP increase for another six months, through June 2011. The FMAP increase and its accompanying maintenance of effort provision, which was included in last year's stimulus bill (ARRA), has been an incredibly important way to help states maintain their Medicaid programs during an economic downturn. Set to expire at the end of the calendar year (which is right in the middle of states' fiscal year), the Administration's proposed extension would provide critical relief to cash-strapped states. Since the budget extends the recovery act provision, states would still need to maintain Medicaid eligibility and enrollment/renewal procedures to receive the increased FMAP.

The budget also assumes savings from health reform, signifying the President's continued commitment to passing a bill. Using the average of the savings estimated under the House and Senate bills, the budget projects roughly $150 billion in savings over 10 years. 

The budget also proposes:

 * Extending, through the end of 2010, the COBRA health insurance premium assistance program established under the recovery act (set to expire at the end of this month).

* Providing an additional $290 million for community health care centers, $110 million for continuing investments in health IT, and an increase of $250 million for Medicare, Medicaid, and CHIP fraud and abuse initiatives.

* Allocating funding to strengthen rural health care, expand Indian health services, increase wellness and prevention activities, and conduct research on the comparative effectiveness of medical options.

* Establishing Medicaid and Medicare demonstration projects to coordinate care and lower costs for seniors and those with chronic conditions.

Also of note is a 229% increase in state Medicaid performance bonus payments. This change reflects the Administration's expectation that states will continue to enroll more children in Medicaid, resulting in an increase from $73 million in FY 2010 to $240 million in FY 2011 in payments made to states.

The President proposed a couple of measures that could impact programs for low-income families moving forward. This includes a 3-year non-security discretionary spending freeze (although Medicaid, CHIP, and most health programs were excluded) and the creation of a bi-partisan fiscal committee, which is charged with, among other things, addressing the growth of entitlement spending.

Expect to hear more from us in the coming months as Congress begins its work to have a final budget signed by the President by October 1.

Most of us were glued to the TV set last night waiting to see what President Obama was going to say about the future of the health care reform bill given its now uncertain fate in Congress. As I settled in to watch with my husband and one of my girls (the other one sadly could not be pried away from reading New Moon), I found myself getting antsy.

Why do we find ourselves in this situation? Why isn't he announcing that he signed the bill today?

Passing comprehensive health care reform legislation is extraordinarily difficult. Passing any comprehensive bill is difficult these days. But I have very little patience at this point for the political pundits and everybody else assessing the political calculations of whether passing the bill is the right political choice. Personally I think it is. And I thought the President did a nice job in his speech last night in making clear that he wants to see a bill. But the public wants to see results -- results that will improve the lives of families.

Having worked on public policy issues affecting low-income families for the last twenty years in Washington it's easy to become cynical. It's almost embarrassing to let your compassion for people show through in public without citing research and data and carefully crafted messages. Here goes, I'm going to let the policy wonk take a backseat and talk about people because that's what this is really all about -- people who need results from our leaders.

Children need health care reform to ensure that they have access to affordable comprehensive coverage. Yes kids have done relatively well with our current assortment of public programs, but not everywhere. Some states are leaders, but other states will never catch up. And the current state fiscal crisis reminds us that until we have a universal, federal guarantee of comprehensive coverage for children we will be selling our kids short.

Parents need access to affordable coverage options that don't disappear when they lose a job or become sick. Coverage of low-income parents through Medicaid is inadequate at best and almost non-existent in some states. Children do better when their parents have health coverage. Expanding Medicaid coverage to all parents below a specified income level regardless of where they live, as both bills do, would be an enormous victory for the most vulnerable families in our nation.

So-called "childless adults" need access to affordable coverage options. OK the first two are kind of no-brainers for childrens' advocates. So why do I keep finding myself thinking about two "childless adults" that I met in 1991 when I was writing a report on homeless veterans? Childless adults are not politically popular. But I can't get the stories of these two men out of my head.

Both of these men were Vietnam veterans and had seen combat duty in Vietnam. One was white and one was black. One was a Member of Congress who was the primary sponsor of a bill to help homeless veterans (I'll call him Al) and one was a homeless veteran (I'll call him Bill) who was an eloquent spokesperson. At the time that I did the report, I met Bill who was living in his truck. He had, ironically, been working in the Senate as a maintenance worker who moved furniture around. But one night a woman got shot outside his apartment. A shotgun ripped off half of her face. Bill went out to help her (he had served as a combat medic in Vietnam), and she died in his arms. This tragedy triggered PTSD and his blood pressure soared. He lost his job and his health insurance and got little help from the VA. He ended up living in his truck. He was a "childless adult" with no insurance.

Now let's turn to the former Congressman. Surely he doesn't need any help from the pending bills?? Well it turns out that because this public servant was an extraordinarily dedicated guy, he turned down all of the perks of his job (the pension and the health insurance). Then, at an early age, he developed Parkinson's disease. And because he had the audacity to live longer than expected, Al has hit the lifetime cap on his insurance policy. Now people have to have fundraisers to pay his medical costs. Pending bills would remove lifetime caps.

So let's all redouble our efforts to pass health reform. For the kids, their parents and for Al and Bill.

The image of sweet little Sarah McIntyre immediately came to mind as I read the Pediatrics Journal's study that showed that children with special health care needs were 57% less likely to be uninsured in 2005 than those in 2001.  The Pediatrics report is great news but it should be taken with a dose of caution.  CHIP and Medicaid have helped improved access to affordable health coverage for children with special health care needs but those gains can be as precarious as their health so without continued vigilance, this trend could rapidly deteriorate. 

The precarious nature of health coverage for children with special health care needs is what brought Sarah to mind.  Sarah is a 3rd Grade girl from Yakima, Washington who was born with a hole in her heart and cysts on her lungs.  Her life depended on consistent, quality health care that she received through Apple Health for Kids, Washington State's Medicaid and CHIP program.  She lost her health coverage when her parents received modest raises that put their income slightly above the eligibility cap.  The McIntyre family went through a difficult period in which Sarah was uninsured.  Fortunately, Washington state expanded coverage to families earning up to 300% of FPL with the help of increased federal funding included in CHIPRA and Sarah was able to enroll in Apple Health for Kids once again.

There are many more Sarah McIntyre's out there.   According to another report in last month's Pediatrics, approximately 1 of every 7 children in the United States has special health care needs. Children with special health care needs are those who are at increased risk for a "chronic physical, developmental, behavioral, or emotional condition and who also require health and related services of a type or amount beyond that required by children generally". They are at greater risk for unmet health care needs and, on average, expenditures for their care are about 3 times higher than for other children. Their families oftentimes must rely on Medicaid or CHIP programs to find coverage.  (Medicaid coverage is a better fit because it is more comprehensive than CHIP and provides an important lifeline to children whose health care needs are often greater than the norm and whose families' limited incomes make it difficult for them to afford uncovered health expenses.) There are also many children with special health needs who remain uninsured because insurance providers will not accept them with a pre-existing condition or because their families can't afford the high private health insurance premiums to get the coverage their children need.

Sarah's story and the Pediatrics reports remind us of what's at stake in the health reform debate for families of children with special health care needs.